In Case You Missed It: October 2018

In Case You Missed It is a round-up of news articles and commentaries featuring Dying With Dignity Canada speakers and stories. Did you miss these stories in October?

Halifax’s Audrey Parker spent the last weeks of her life speaking out about the challenges facing Canadians who have been Assessed and Approved for assisted dying.

Audrey, whose breast cancer had spread to her bones and the lining of her brain, feared that she would lose capacity and be deemed ineligible for medical assistance in dying (MAID). Wishing to avoid an inevitable horrible death, Audrey opted to die earlier than she wanted to despite her desire to enjoy one last Christmas. She died "a beautiful death" with the assistance of a nurse practitioner on November 1.

In her final weeks, Audrey helped us at Dying With Dignity Canada identify a new group of Canadians whose rights are at risk under the federal law: people who have already been Assessed and Approved for assisted dying.

Like Canadians who want to access assisted dying via an advance request because of a dementia diagnosis, people in the Assessed and Approved category are harmed by the rule that one must confirm one’s wish for a peaceful death in the moments before the procedure is to take place. This puts an enormous, unfair burden on people who are at risk of losing capacity, including patients who require strong medications to manage their pain.

Audrey never once minced words about her predicament. In this must-read Globe and Mail piece, she put it plainly: “They’ve literally taken my ability to die on my own terms away from me.”

She captured national and international attention, reigniting a conversation about our assisted dying laws. The following is just a sample of some of the coverage about this inspiring, courageous woman:

Dying With Dignity Canada staff had several phone conversations with Audrey in the last month of her life. Our conversations with Audrey have significantly informed our upcoming advocacy work, as we prepare to launch a campaign in Audrey’s honour to restore the rights of suffering people who have been Assessed and Approved for assisted dying.

Our official statement on how Audrey Parker “changed the national conversation” around assisted dying can be found here.

DWDC’s Communications Officer Cory Ruf spoke with The Globe and Mail about our commitment to continuing Audrey's work:

“As an organization, we want to make sure that no one who has been assessed and approved for assisted dying has to face the same cruel set of choices that Audrey has faced. No one should be forced to die earlier than they would like to or forgo proper pain care to access their right to a medically assisted death.”

(The article also includes this statement from federal Health Minister Ginette Petitpas Taylor: “If I would have had the authority and the power to give a specific exemption to her in her specific case, I would have been pleased to do so.”)

DWDC’s CEO Shanaaz Gokool talked to CTV News about the cruel choice Audrey was forced to make:

“All Audrey really wanted was to live for one more Christmas with her family and friends. She said to me yesterday that she wanted Canadians to know that today at two o’clock Atlantic time, with her dying breath that this is wrong that she was forced to die too early.”

Shanaaz also spoke with CBC News Network’s Andrew Nichols about Audrey’s impact and legacy. In the interview, Shanaaz clearly defines Audrey’s category of Assessed and Approved and outlines the barriers to choice that individuals in this category face.

These individuals have already gone through the rigorous assessment process for MAID and have been approved, but are faced with two cruel options: cut their precious time with loved ones short because of fears of incapacity or risk losing capacity and their right to have an assisted death altogether.

Audrey’s friends and DWDC’s CEO Shanaaz Gokool spoke to CTV’s The National about Audrey’s legacy, the problems with the current law, and this cruel choice facing people who have already been Assessed and Approved for an assisted death.

Justice Minister Jody Wilson-Raybould has said that the government is not considering changes to Canada’s assisted dying law, despite Audrey’s pleas.

DWDC’s Communications Officer Cory Ruf spoke to The Canadian Press in response to the Justice Minister’s statement:

“More stories like Audrey’s are going to come their [the government’s] way. Her story, the decision she faced at end of life is not unique and government knows that.”

Shanaaz appeared on CPAC’s Primetime Politics with Peter Van Dusen to discuss Audrey’s final pleas and to tell Canadians what Audrey told her the day before her death:

“[Audrey] wanted all of Canada to know with her last dying breath today, that being forced to die too early…is just wrong.”

Audrey Parker’s powerful and beautiful obituary — which she wrote herself — was published by The Chronicle Herald. These were her powerful and poignant closing words:

“Throughout my end-of-life journey, people marvelled at how comfortable I was with dying, but I did not leave without sadness.  It’s hard to say goodbye.

Until we meet again, I leave you with a simple message: Be kind … because you can.”

Note: More Audrey Parker coverage will be found in November’s edition of In Case You Missed It.

As of Nov. 1, clinicians must complete comprehensive reports about assisted dying requests and procedures. The new regulations for monitoring assisted dying, which were unveiled by Health Canada in August, will ensure more consistent and robust data is compiled across the country. But clinicians and advocates have raised some concerns about the new rules.

CEO Shanaaz Gokool spoke to CBC News about concerns that the amount of new paperwork will deter clinicians from providing MAID:

"They [Health Canada] estimate a full reporting per patient will take a matter of a number of minutes. And we actually think that that may not be the case. It's really, really important to balance our need for information and data … with the rights of the vulnerable people who are already struggling trying to find the help that they need from the limited number of clinicians who assess and provide medical assistance in dying.”

The Quebec College of Physicians said these new federal regulations on reporting medically assisted deaths add needless bureaucracy that could make doctors less likely to get involved in end-of-life procedures. CTV News Montreal reported the story.

This Presse Canadienne article outlines why the Quebec College of Physicians is telling its members not to fill out the paperwork now required by Ottawa.

You can read more about the reporting guidelines on the DWDC blog

Covenant Health, a Catholic health provider in Alberta and the largest Catholic health provider in Canada, has a default policy that does not allow patients to fill out their MAID requests forms, be assessed for eligibility, or access MAID on its properties. This has caused incredible suffering for some patients and their families.

Edmonton's Doreen Nowicki was told she could be assessed for assisted dying in the Covenant Health hospital room where she was receiving palliative care. Then, the hospital's management changed its mind, leading Doreen to be moved to a sidewalk bench for the evaluation. Her husband and daughters spoke with CBC Edmonton’s Jennie Russell about the indignities Doreen faced as a result of Covenant Health’s policies:

"We were made to feel like criminals. Why could we not have a conversation or an assessment that she had a legal right to have in a health-care facility that is publicly funded? I don't understand that."

Doreen’s family also spoke with The Canadian Press and to CTV News Edmonton.

This story highlights the appalling consequences of allowing publicly funded healthcare facilities to opt out of permitting MAID on site. We thank Doreen's family for shining a light on the human cost of forced transfers for MAID.

Doreen’s family later spoke with CBC Edmonton’s Jennie Russell about their disappointing meeting with Alberta Health Minister Sarah Hoffman.

“I don’t feel like anything is going to come out of it,” Doreen Nowicki’s daughter, Michele Emmanuel, said Friday. “We told our story. She listened. But we didn’t feel confident that anything would be changed.”

DWDC CEO Shanaaz Gokool spoke with CityNews about Doreen Nowicki and why publicly funded institutions must not be allowed to ban legal healthcare services like MAID.

“It’s appalling [and] unacceptable. To be asked the most personal questions about her healthcare and her life [on a sidewalk bench] is just shameful.”

CBC Edmonton’s Jennie Russell also wrote about how neither Covenant Health nor Alberta Health Services tracks how many patients have been forced to leave Covenant’s health facilities for MAID assessments and procedures.

This was prior to the new federal regulations coming into force on November 1. DWDC CEO Shanaaz Gokool commented on how the new reporting and monitoring rules will reveal how many forced transfers are taking place across the country. She also spoke about the impacts of these harmful policies.

"This policy of forced transfers for the most vulnerable creates so much more suffering," Gokool said, adding that any delays to a patient's access to assisted-dying services "could result in them either slipping into a situation where they have lost capacity, or they may die while they are waiting.

"In both of those instances, they will lose the right altogether to have an assisted death," Gokool continued. "And that is simply not acceptable."

Alberta Health Minister Sarah Hoffman continues to dodge questions about Covenant Health’s assisted dying policies, as reported by CBC Edmonton’s Jennie Russell.

As part of CBC Edmonton’s coverage of forced transfers in Alberta, a University of Alberta law professor said the province must quash Covenant Health’s assisted dying policy. Prof. Ubaka Ogbogu called the policies “flat-out wrong.”

“The stakes are quite high because we have one of the largest health-care providers within the province saying they won't provide a service.”

Dana Livingstone, a DWDC supporter from Vancouver Island, started a petition calling for the government to respect the rights of people whose choice has been threatened or denied by the ban on advance requests for assisted dying.

She shared why she felt so compelled to make her voice heard in this powerful Facebook post. We thank Dana for using her family's story to help and inspire others.

DWDC CEO Shanaaz Gokool spoke with CHEK News about Dana’s petition and the need for advance requests for assisted dying.

The Saskatchewan government has ended its practice of recording medically assisted deaths as suicides. Assisted deaths will now be marked as “unclassified.” The policy change was reported by CBC News and CTV News Saskatoon. Clinicians and family members responded to the announcement:

"My mother died because she was full of cancer.… I think it's a bit of a cop-out to say that it's unclassified. That suggests that you don't know why someone died," said Susan Tataryn, whose mother’s assisted death was recorded as a suicide. “It’s better, it is absolutely better. Calling it unclassified is progress but it’s only halfway there.”

A Saskatchewan doctor spoke to CBC News about systematic changes that are coming to address delays that have blocked some sick and suffering patients from accessing MAID.

“We've had a few cases where a person has lost capacity, right near the end, family all there, supporting their family member and they can no longer have this because [they lose capacity] right before they have to say again — 'yes I want this' — and really be with it,” said Dr. Lilian Thorpe, a member of the MAID team in Saskatoon.

The Times Colonist reported that Vancouver Island currently has the highest rate of assisted death in all of Canada.

According to an Island Health report, the rate of medically assisted deaths on Vancouver Island is about five times higher than in the rest of the country.

Letitia Meynell, an Associate Professor in the Department of Philosophy at Dalhousie University wrote a persuasive and deeply personal argument in support of advance requests for assisted dying. The piece was published by Impact Ethics.

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